Would you like a cookie?

Today was a pretty crazy day. Really it started last night at 1030pm saying hey dont come in in the morning your working tomm night and the whole weekend of night shifts. We finally have a weekend to work together on the house and Jarrod has to work night. It is so frustrating. Not to mention that poor Jarrod is now going to end up working at least 12 hour days 8 days in a row! So to celebrate our misfortune we went down to Roanoke, went to hhgregg and spent a ton of money, had some tex-mex and went home. We bought a new 50" tv (so didn't need) and a 5.0 c-ft freezer (which we kinda need). HHgregg was fantastic! The store was clean, the customer service wonderful, everything was so new and shiny, it was easy to get carried away (hence the 50" tv). NOw we are going to need to sell the ol 37" sony we have which is only like a year old and was a great deal itself but just not big enough since we use this tv for a computer screen. I feel a little bit like we went over board and I was thinking as I made my husband a treat to make up for giving him bad new while on his crappy night shift(overdraft on a checking ridiculous!) is there any way I reward myself other than food and stuff? What else can you reward yourself with? How can I find that? I wish I liked running or kayaking or hiking in a way that I could feel like I did great today I deserve a half hour run. There are just so few things that I can give myself that doesn't cost something. Also why do I need a reward in the first place? Is it just our culture that if bad things happen to you, you feel like you deserve something to make up for it? Even though I can't find a job and my son has a disability there are millions of people who have it worse than me. I wish I could get rid of that sense of entitlement. But I am lost on what to replace it with.

It's the little things

Yesterday we had our team meeting with our therapists. While working with the physical therapist George did tummy time for 3 whole minutes!! I know this may seem like nothing but just in the end of February he couldn't tolerate more than five seconds. I remember when I read about his conditions and talked to the parents everything said that the smallest things are going to seem like the most incredible accomplishment and I truly have seen that in the past few weeks. I have been terrified with his earaches (the first meds didn't work so he just got worse and worse!) but other than that I have so much hope for him. I can't wait until he gets that giant noggin lifted while on his tummy. Really every day with George is a miracle. I am so lucky to have such a special little man. :)

Yay Nurse!

My new nurse is fantastic. I know last I wrote that I was considering getting rid of the service but she makes it all seem much more worth while. She is on time and she is reliable, she makes sure George does all his streches and tummy time, she alerts me when something has changed or if she notices something off. Because she is so good about making him do his tummy time he is finally starting to enjoy it and lift up his head. Also if it wasn't for her I never would have realized he had an ear infection. I really think that our new nurse can be an integral part in George's development. And she makes me feel comfortable trying to go back to work part-time.

Shouldn't this be something that isn't a hassel?

For the past few months I have been lucky enough to have a nursing service that sends a nurse to my house to help with George. This all started after George's Nissen surgery because the hospital staff was appalled at the fact that I, a nonmedical person, was home alone with no help taking care of my own son. I was extremely hesitant to start because I was so nervous about bringing someone in to my "turf" to take care of my son. I felt like it would make me a bad mother because I was a stay at home mother so what in the world would I need with a nurse. But eventually the hospital staff and my home health nurse convinced me to try it and I had a wonderful nurse come and take care of George. I was lucky enough to have a nurse with the opinion that as the mother I would know what George needed and who seemed competent enough that I was okay leaving him alone with her. I was starting to think that maybe, just maybe I could start going back to work.

Than it started to become unreliable. My nurse got sick, her son got sick, it snowed and she couldn't get out of her driveway, she was running late for this reason or that, she had a doctor's appt etc etc etc. They all seemed like good excuses but there were a lot of them and all I could think is what the hell would I do if I had to go to work today? I would be screwed. Because you can't take a special needs 7 month old into work with you. It doesn't work. Luckily I had my nurse during the hardest months when George was recovering from surgery but as George recovers back to his usual self I'm starting to realize that really there is very little that makes me different than a mommy with a normal baby. In fact there are things that make it easier for me. George can sleep when he eats. Due to his paralyzed vocal chords his cry is like a tiny mew that is more cute and heart breaking than irritating. Taking George out on errands is difficult, but it would be if he didn't have the condition he does because HES A BABY.

So today when my nurse didn't show up. And I called the nursing office to find out "Sorry it was a miscommunication, it was my fault". I started to think is this a hassel really worth it. Not only am I expected to constantly babysit my coordinator than whether I'm home or not, whether I have company or not there is a person in my house Monday through Friday from 9 to 5 and I do not live in a large house. 1200 square feet and the nurse hangs out in the two rooms that I use the most. And they are here on days Jarrod works so if we need to do something together George has to come with us. What I really need is someone to come sit with him when I have a drs appt or I want to go to the store. I don't need someone to spend the day with him when I can do it myself. Also the nursing service shouldn't be the issue here it should be insurance. But its not so I think I have decided that unless things drastically change, I'm done when my authorization is up. I am tired of having one more medical thing that I have to call over and over again. Especially when I can't rely on them enough to make the nursing service worth my time because there is no way I could have a job and miss as many days as I would have to. I'll just have to find a very good babysitter.

Sigh

I've been having just one of those I feel stuck in my life days. I love my husband, I love my son, I even love my crazy dogs. But what if I could go back and change my major decisions. What if I went to school in Canada? What if i stayed an Econ major? What if I studied abroad? What if I never left the cadets? Would things be easier or just different? Down here in middle of nowhere VA I feel like Im missing out on so much. The world is flying by and Im stuck in pause. I keep looking for my play button but I feel as if Im afraid to push it. I hope I push it soon or I may be stuck forever.

Murderers!

My dogs killed another deer (they killed one last year around this time when they were only six months old). Lucky me this time I got to watch the entire thing because it was in the backyard. As usual I opened the door to let Hans and Heidi out. I noticed Hans sprint out the back door and Heidi follow close behind leaping of the steps. So I looked out to see what could have gotten them in such a tizzy and there's two does in the backyard. I continued to watch because I was worried that one would lure Hans out of the yard and that I would have to go chase him down. Instead as the deer were fleeing, Hans close behind, I see one take a huge leap and the other run smack dab into our little fenced in area. It didn't have a chance. Hans kinda nipped at it but Heidi went straight for the throat. I was in shock, it was like watching the cheetahs take down a gazelle on Big Cat Diary. Except it was my backyard and my dogs.

I weakly called Jarrod. He threw his boots on and ran out to get them off their fresh kill. Luckily as older and wiser dogs Jarrod was able to get them off the thing quickly, but not in time to save it. So then we had to call the Sheriff's office to report our little murderers and then hang the thing in a tree since Jarrod had to get to work.

Bleh!

George is no longer interested in baby food. I could just cry. It is so frustrating. Now when I try to put the baby food in my mouth I get a weird face, he spits it out, and what he doesn't spit out he gags on. Why is it every time we get one step forward we seem to go 2 steps back!?! At this rate George is always going to eat through a tube. While its nice for colds, giving medicine, and keeping him a healthy weight, dealing with all that is worth it for him to be a regular kid. I want him to be able to eat at friends houses and during lunch at school.I just pray that this isn't an unrealistic hope.

Peaches for Free

Is it weird that I almost feel upset that my son is not a huge fan of peach baby food? Today he tried peach for the first time and the response was meh. He even pushed it back out like what is this stuff you are giving me. I LOVE peach baby food. I was still eating it every now and than at like 12 and I am pretty sure that I will be finishing any leftovers that he has from the stuff now.

It was so exciting when George did well at the swallow study but now faced with what we are actually able to do, it just seems like so little. Every bite is such a huge deal but its such a little thing. And its so depressing when he doesn't seem interested at all. He looks at me like why are you trying to put this stuff in my mouth. The dread comes pouring back in that maybe he's just going to have to eat this way for the rest of his life. Maybe I'm going to have to say "No rough housing you might tear out George's button" when he wants to play with his future siblings. Maybe he wont have siblings.

We are thinking we want more children and my doctor gave me the name of a geneticist with Boston College to get in touch with. That was two weeks ago. In a way I'm terrified of the minute possibility that maybe, just maybe this is a genetics issue. What if this is the only kind of child I can have? What if every one of them is a major risk for having some severe medical issue that makes it impossible for them to be just like other kids. Than what? Do we go forward fingers crossed that the next child will be physically fine? I don't think I could handle another NICU/PICU baby. Those first two and a half month's where George lived in the hospital was so hard. Every day I fought a nervous breakdown. All of a sudden your a mom and now you are responsible for another human being. In a way that other mom's luckily don't have to be. You are the one saying yes I think we should do this surgery. And every day you visit this child that barely feels like he's yours because all your contact is so sterile and observed. And you are still so naive that you think the doctors and nurses know what is right and what is best because they went to school for it, they see it every day. It took me a while before I realized that while they may have seen other children with conditions like my son, they weren't my son. Every child is going to be unique. There is no one size fits all with health care. By the time I went back to the hospital I knew that I know George better than any of them and while they are trained professionals and I should take into consideration their knowledgeable ideas and suggestions, they are not going to be 100% right and most of the time it is just an opinion.

To think if I had listened to 75% of the the doctors I worked with George would have a tract right now. And for what? The off chance that he might need it. He may be noisy but he breaths just fine without one. The last thing I needed was another foreign object in his body that I had to watch for complications just because there is this slight chance he may need one in the future. That is one thing that I am proud I gave my son a chance with. That I fought those doctors because I knew he could do it. While I understand that for some children (especially other mylo, arnold chiari sufferers) this is something they need to survive, George didn't. And so many doctors ignored that fact and got so caught up in well he's probably going to need it so lets do it now so he doesn't have to have anesthesia later. If all the doctors had said yes it would have been a different matter but I paid attention to the pulmonologists who told me of the constant repairs and the ENT who held out as long as possible. And look at George now breathing on his own and trying peach baby food. :)

My dead music

Lately I find myself hating music videos and performances. All I can think is the regretful "I could do that." But there are plenty of reasons why I couldn't. Number one being my fear of rejection. Being in music involves constantly being rejected. Even those who have "made it" in music are constantly being critiqued and put down by critics and regular people alike. You can't please everyone. Starting in music is rejection after rejection in auditions and performances. There are very few who never get to feel that. And vocal music is so personal, its your voice. Something that can only be changed so much like your hair or your looks. Some people are never going to look good no matter how much they work out, they will never be a model. And they can't change that. Same with people, no matter how much you practice or work with vocal coaches, there is a limit to what you can achieve with your voice. After a rejection in my college's vocal program, being told I had no talent by a well meaning father, and being rejected later by an a Capella group. I was done. I gave up the only thing I was ever passionate about in my entire life. Now I feel lost. I have nothing to do. I live in an area where music and singing groups are few and far between. The only person I perform for is my son who cries if I sing anything in a real voice. I miss music desperately. I will always be plagued by what ifs. What if I had auditioned at other schools, what if I had auditioned for a group my freshman year, what if I had tried out for American Idol. Probably things would not be any different. Maybe I would be teaching voice lessons or singing in a church choir. I don't think I ever had the ego to make it, to believe that what I do is the best, to not feel nervous or self conscious when I sing in front of others. But either way I will always have to live with the what if's and I hope that I can use that to push my kids to at least try. Sometimes it is just better to know you tried your best and failed instead of living with the nagging what would have happened

Babysteps in food

My son George has difficulty swallowing. Because of this he eats through his MicKey button which looks like the valve you use to blow up a beach ball or pool floaty. He looks like a little inflatble baby. :) We tried to get him to drink from a bottle for month's only to find that he couldn't handle the thin consistency and was aspirating. For a while we had to put the whole eating by mouth project was put on hold but once George hit 6 months he was old he had reached an age where baby food could be a safe choice. We started giving him small timid spoonfuls of sweet potatoe, cartot, apple and banana; terrified that all this time that food was sliding into his lungs. It is really difficult to tell because when George aspirated milk it looked like nothing bad was happening, it didn't bother him at all. I had almost completely given up hope of George ever eating like a normal kid. Which for a food addict like myself is unimaginable. Than last Tuesday we had a swallow study. He did great! We watched the radioactive carrot baby food go where it should on the xray screen. And when he wasnt swallowing he was protecting his airway by pooling the food in the back of his throat. My little chipmunk was eating! While he still can't handle drinking anything, the thicker baby food will help him to build up the muscles in his mouth and throat so that a cup of milk can become a possibility. We are so excited and my goal to have his button removed by preK.